Hi, I’m new here... had a large dermoid cyst removed along with the ovary and endo diagnosis in April. I’m feeling pretty deflated after appointment with endo specialist who pretty much said we can try a few things but there are no guarantees with anything, and we need to rule out symptoms being psychosomatic. When I asked what actually causes endo he said if I could find the answer to that I’d be a very rich person ):
I don’t know what to do... I’m due to have a Mirena fitted in a few days, but he told me that won’t stop ovulation which is my worst time. My hormones are all over the place, I feel extremely unbalanced, I know I’m not myself. Chronic fatigue, Fibromyalgia symptoms are mostly 7-10 days around ovulation and menstruation (which is not as bad and only 3 days) The twinges in what seems to be a ‘phantom ovary’ are most of the time, putting pressure on bowel and weird nervy pain down my leg and the weird diaphragm/ nervy pain spreading to right shoulder up face and down arm and hand on right side are most of the time too, but at their worst during ovulation and menstruation.
I’m due to move to London to study for my dream career after previously thinking it wasn’t an option for me, and now I’m not even sure I can physically do it. I’m working lots on keeping the PMA (positive mental attitude) through meditation, being in nature, keeping focussed on following my dreams... but more and more of my life is passing me by, while I’m in pain, exhausted or both and I want to get excited about the next chapter.
I hate the idea of going back on the pill and becoming a crazy and I’m worried about having time out for exploratory surgery when I havn’t told the university about my condition (should I?) I’d love to hear from women who may have been in this position, did the Mirena help you? 😊🙏🏼
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What treatment did you have to go with the endo diagnosis? What they've said doesn't sound what I'd expect of a specialist, but I am still pretty new to endo and only spoken to one consultant so far.
Well the surgeon just said she’d spotted some endo while they were removing cyst/oopherectamy so couldn’t see how bad it was and I havn’t had any other treatment for endo yet, just taking loads of painkillers which take the edge off sometimes but are causing havoc with my stomach. The endo nurse was amazing (phone appointment) and although this consultant seemed to know his stuff, I feel like he thinks its half in my head. He did say we can do exploratory surgery, but theres no garuntees and I’m trying to buy myself a bit of time I guess, just relief from symptoms so I can get my head around my life!
Have you researched the consultant? It might be worth noting some questions and speaking the endo nurse, she'll be experienced enough to at least answer some and find out the rest. Have you had MRI?
No I haven’t researched him, I was told he was quite ‘snooty’ but very experienced. I did pick up a vibe from the nurse that made me think he might be a bit cold and definitely felt like I wasnt really understood.
I think he was trying to be honest that there are no garunteed quick fixes, and its a trial and error thing, I suppose its good not to make promises. I just came away feeling there was no hope! I do have a slight scoliosis with one leg 3.5cm longer than the other, so my pelvis is out of alignment. He said this will be having a big impact which I agree with in some ways, but the specific weird diaphragm/shoulder/neck/arm pain is like clockwork with my ovulation and menstruation, and its different from other back pain I get. Who knows how much of each contributes to other symptoms.
Good idea, I will research him, he suggested we review in three months, by which time I’ll be in London so maybe get a second opinion when I transfer to endo clinic there. I think I’m going to go ahead and get Mirena fitted and see how I go. In the meantime I’m making dietary changes which have been suggested a lot to reduce oestrogen production in body.
My GP is amazing, he really wants to get on top of my pain, something he suggested but I don’t like the idea of, is neuropathic pain relief ... I worry if it ‘switches off the brain’s pain receptors‘ what else it might ‘switch off’?!
I’m quite a holistic person so trying more natural ways is my preferred option, while realising sometimes there is a time and place where medicine is useful and effective, even if it is the lesser of evils. Obviously dealing with them problem rather than masking the symptoms too. So tricky!
Your consultant and I would likely clash big time 😂 I think I’ve been lucky so far. The endo consultant looks ok in photo and reviews seem good, but I won’t know until I talk to him Friday. I’ve been lucky so far.
What did they suggest for neuropathic treatment?
I’m the same for holistic, I use/give various therapies, massage hasn’t helped, until surgery sorts out sticky bits it’s unlikely. I am sorting out some oil blends to try.
As far as feet/ leg length have you had adjustments made through podiatry? If you haven’t they can have specific insoles made
Haha, yes I dont want to hang out with him that’s for sure!
Yes, I have insoles and a shoe raise. It has helped a lot and I’m pretty good at wearing it. I can’t wear it for yoga which I do quite a bit, it’s annoying as that’s the time I need to be most aligned.
Neuropathic pain relief options he offered are anatriptaline, gagapentin, pregabalin or duloxatine. All of which add to aiding sleep so the idea would be to take at night, to get better quality sleep (helpIng to manage chronic fatigue symptoms) They are all used in higher doses as antidepressants and although that wouldn’t be the purpose for me, I feel weird about it. I’ve also witnessed people with awful side effects. He was very understanding of my feelings towards doing things naturally though. We talked a lot about lifestyle factors and I’ve already changed things like screen time, set bed times, caffeine intake, water quality and nutrients. These are helping for sure (before I didn’t haven’t the energy and brain clarity to join a forum like this or apply to university)
What oil blends are you trying? I would normally have acupuncture which is amazing, but not an option at the moment. I am having Bowen on Thursday though
Is this your first appointment then? What stage are you at and what have you tried so far?
I know yoga is traditionally bare foot, but maybe try with, it wouldn’t be unreasonable for standing poses.
The pain consultant suggested amitriptyline, I know it’s used for other. I mentioned this at the time and he said he only recommends it for pain, he couldn’t prescribe for depression. It’s his go to. It was expensive pride consult 😂. I chose this particular dr as he was the pain guy for BSGE team. It’s also one reason why I had huge whinge at surgery on Friday as they are fixated on stress not physical and my insides are screwed🤣
Started at 10mg, he said up to 30, I have tried two, but I think causing daytime sleepiness so back to one. Sleeping has improved a bit, internal abdomen nerves shaking not as bad.
I had acupuncture many years ago, it did work for period pain, I’m not keen on needles though.
I’ve bought six to make different blends including clary sage, plai and frankincense. I have to get into the right zone and sinuses.
I had lap in February, the consultant who did this discovered more than he bargained for and although treated endo he could get to, it’s in the bowel, who knows where else, numerous fibroids and enlarged uterus, also pressing on bladder according to MRI. I’ll try anything at the moment.
Have you tried taking it at night? How long have you been taking it and how do you feel in yourself? Sorry, what’s BSGE?
I don’t like not being barefoot for yoga, cause of the way you spread your toes, and weight and feel the earth etc, impossible in shoes... but I have just got a little plastic heal raiser that slips on like a half sock... Bit weird but I’m going to try that!
I know what you mean, for sure mine was partially caused by long term stress, but Ive done a lot to change this in my life! It’s hard not to get into a vicious cycle too.
My endo nurse suggested pain clinic referral And I’ve been bounced between people saying it’s the other’s responsibility but consultant gyne said lets not do too many things at once when I asked him, which I do see the sense in.
Was your lap just to investigate or did they take some out? I’m trying to work out if the lap he suggested for me would be very invasive or not.
Not sure if you’ve heard of this, but I have talked to two serious endo sufferers who both swear by following the endo diet, literally lifechanging for them. I just bought one of the girls recommended, by Carolyn Levett, I already feel a bit better after cutting the wheat for a few days. I don’t do dairy or red meat already and am reducing soy. All of these apparently add to body’s production of oestrogen. It can be very strict but its worth a bit of trial and error and keeping a diary of effects I think. I’m the same as you, will literally try anything!
Would be interested to hear how the oil blends work for you.
I had an MRI in India, when I was diagnosed, came home because they said it was really serious and could rupture, but here they wouldn’t look at the MRI and had to go through whole system of scan and blood test again here, which delayed things, by which time COVID got serious and further delayed everything. Then when things got really serious and I got rushed in and had emergency surgery 4 months later, they couldn’t find my scan so looked at my Indian one I took in with me anyway 😂
I didnt know endo could show on an MRI, I wonder if anyone here would be willing to look at it and identify where it is, because I have loads of film pictures (includes the cyst which was fairly big at the time though)
I take the amitriptyline at night, only three weeks, he said something like 6-8 to really start working. BSGE are the specialist endo centres, you have gynaecologist, bowel, urinary and pain specialists as a team, with a specialist nurse.
Pain varies with endo, if you’ve not had treatment I’m surprised the consultant is saying it’s in your head. I keep having similar battles with GP at times. At least you had the MRI, they get a bit finicky about doing their own tests. I’m sure someone would, no reason for it to be any different, doesn’t India have a good healthcare system.
The heel riser sounds a good idea. A very simple meditation technique is just imagining like tree roots going through the body and out through your feet, it’s very good for grounding, regardless of shoes.
I had treatment at lap, Helica, it’s a type of burning and I think the bits he did get to were a bit better.
As far as I’ve been told endo can show if it’s deep, but not superficial.
Oh right, I don’t even know if mine is a specialist centre, I feel like it is but I’m not sure. I’m so new to all this and learning so much just by being in this group, so greatful for you and others sharing the love!
Well the gyne specialist wasnt 100% saying it was in my head, he read the notes from my long chat with the amazing endo nurse and the first thing he suggested was laparoscopy and second was managing with hormones. It was after that he said we need to rule out symptoms being psychosomatic and I agree that could play a part in things being worse, but its a cycle Of a lot of things stemming from very real pain!!
After my last surgery I initially I bounced back and was recovering really well, it was about 6-8 weeks things got worse with what I now know are endo symptoms. I guess I’m trying to buy time so I can avoid surgery in the next two years while I’m studying... I don’t know how invasive the surgery would be and how long recovery would be.
I’m going ahead with my Mirena today, I’m hoping this and dietary changes will be enough to manage for now and see how I am in three months once I’m settled into uni. Yes I love doing the tree roots, great reminder thankyou! I’ve found some great guided meditations on dealing with chronic pain too which really help.
How long have you been on the amitriptyline? I’d be interested to know how it works out as I think it might be my next shout if necessary!
I would love a report on the Bowen therapy. I’m going to visit my sister in a few weeks and her neighbour is a Bowen therapist, I might ask if I can book with her.
Ive had it a couple of times before, when my cyst was huge, back in March/April I was in a lot of pain and couldn’t really walk. There is a very specific point they will go to for an ovarian cyst and it was interesting because she asked if I’d ever damaged my coccyx, which I have - Ive broken it twice.
I dont’ know how much you know about bowen, but it doesn’t feel like much is happening at all to be honest, its very light touch. It wasn’t a dramatic moment of taking pain away, you really need three sessions close together. However I found it really shifted some things in me, I’m generally quite sensitive to energy work and although it sounds a bit whacky to some, its very real! I felt much lighter, less blocked and weighed down, so yes my symptoms improved and my mindset was ALOT better so overall felt it really helped a lot. I hope that makes sense?
EFT is something I also have been doing which is also a bit whacky for some but amazingly effective! PM me if you want to know more, I can give you an update after my next Bowen session if you like (:
This sounds really weird. You have endo, and I highly doubt your symptoms are 'psychosomatic'. It is a hard journey having endo, and trying to find the right treatment. However, if you have a great doctor, who understands endo you can hopefully get some relief (fingers crossed). It's definitely not in your head. The mirena usually suppresses ovulation. I had either a really faulty mirena or a really weird body, because I started ovulating with it in and then I kept getting my period. In order to stop the ovulation/periods they also gave me a progesterone only oral pill, in combination with the mirena. That has seemed to stop my cycle all together. Obviously, if you are not comfortable taking a progesterone pill because of your previous experiences, please don't! Also, did they remove your endo during your previous surgery? You should defintely tell your university about your condition and not believe any of these doctors when they say that the pain, 'is all in your head' xxx
Thanks for your reply, yeah I agree, I know it’s not all in my head... but I am very aware that chronic pain deprives you of energy, reduces physical ability, adds to putting on weight, not releasing so much happy hormones, generally not feeling so good! I used to ignore signals from my body and just crack on, now I feel like I might be giving them too much attention... so overthinking could make it worse. It’s so hard to keep perspective on these things!
I had progesterone only pill for many years and that was not so bad. The combined pill I tried in the beginning was the psycho one! But according to him, that’s the only one that would stop ovulation. Mirena releases progesterone only and he said would stop lining of uterus becoming habitable, so will reduce or stop periods (mine are quite light so may stop them for me) but most women doesn’t stop ovulation. I don’t understand how taking extra oestrogen will be good.
No it was emergency surgery to remove the cyst and ovary itself it turned out, I didnt know about the endo before that (although it explained ALOT) The gyne who did that was amazing, and she said endo looked quite bad, possibly stage 3, but I now know she is not an endo specialist and she said get a referral if you get symptoms...the specialist said in the photo it doesn’t look too bad, but we would need to do investigatory surgery to Really see what’s going on.
So did your symptoms improve at all with just Mirena? And now with cycle stopped altogether are your endo symptoms improved? How do you find your moods, weight, general wellbeing having both Mirena and Progesterone only pill?
Excision surgery for my endo helped me the most, out of all my treatments. In terms of the mirena, I got it put in during my surgery. It seemed to really help me for a while and I felt great because I didn’t have to get my period anymore. My cycle has stopped, which has meant that I don’t have my horrible crying on the floor periods anymore. Hormonal treatments mainly suppress/‘bandaid ‘ your symptoms, so I do still notice endo symptoms. The trouble with me is that I have adenomyosis and Polycystic ovaries , and because my uterus is so inflamed, it isn’t the best treatment for me anymore and I have to remove it. It’s a shame because I have had it put in twice, and thought that it kind of helped me. I don’t generally get any mood side effects with hormone treatments. I am basically allergic to all oestrogen pills, and I get really bad reactions from them. I am good with the progesterone. My weight is fine and I am doing okay, although right now I am having a massive flare up of my adenomyosis. Now I’m getting the implanon and and progesterone pill so that I continue having the ´background’ progesterone. This is just my opinion though, so the mirena might be completely different for you. The doctors just really wanted to stop my periods.
I almost only ever the pains with my ovulation now. I used to get it a
Lot more regularly when I was younger but it’s mostly gone, except when I’m ovulating it’s the worst pain in the world 😣 I don’t know what to do about it!
I’ve spoken to two endo sufferers who swear by following a diet cutting out things adding to oestrogen production in the body ( oestrogen rise is the ovulation time) Both of them said it has been lifechanging in managing their symptoms. I bought a recommended book on the endo diet by Carolyn Levett. I already avoid dairy, but wheat is the next thing Ive just started going without to see how it goes and reducing soy. I haven’t read much of it yet, but i think its about avoiding things at certain times of the month.
So sorry to hear that endo has turned your life upside down (I know the feeling all too well)
Your consultant doesn’t sound the best to be honest, you can always ask for a second opinion....
I tried the Mirena and although it wasn’t good for me I’ve spoken to quite a lot of people who have bad endo and they’ve said it’s worked for them....
Maybe worth trying it for 6 months as it could be a game changer....
I’d definitely tell Uni about your condition, do not be ashamed or keep it hidden it is a disease and more people need awareness how hard life is living with it.
You sound like a very positive person and I hope things work out for you with your treatment and your move down south
Thanks for your message Amy, so good to know I’m not alone.
Yes, he said lets review in three months, which will be once I’ve transferred to the London endo team so maybe I can get my second opinion there, and have settled into uni so feel able to tell them. I feel weird saying it before I’m settled in, I’m still getting my head round the fact I have it and what it actually is... I also don’t want to give it too much attention, labelling things somehow makes it seem like they have power to be bigger, does that make any sense?
Do you have any hormone treatment now? Have you tried dietary changes?
Thanks so much for the well wishes, its actually up for me! Northeast from Cornwall... VERY different x
Hi ovulation is my worst time of the month and I have tried the mirena coil a few times and no it doesn’t stop ovulation so you will continue to have the pain I am afraid to say.
Hi I did finally stop bleeding after 6 months but that was all. I have been on Depo Provera for 2.5 years now that stops ovulation pain but I have had a few breakthroughs so I had to do a course of Zoladex.
Just re reading this post and wondering if you have tried or can afford a naturopath? I went to a naturopath after I was originally diagnosed in 2002 and she gave me a diet and herbal pain killers which really helped. I would love to do it again but they’re very expensive to see. The herbal tonic she gave me was the only pain relief which worked for me at that stage, that was when my pains were raging in my early 20’s and I would get very intense period cramps, and bouts of pains throughout the month. 😣
Oh that’s a great idea! I have been thinking something along these lines actually.
No I can’t afford it at the moment but it would be something to aim for! Is it something you need to keep up? Like does it carry on being expensive with the herbal tonics?
Just wanted to ask how your cyst got diagnosed? I have a cyst on my ovary, just under 5cm which was thought to be a endometromia, however they are now saying it doesn’t look to be this & I need a MRI to confirm what it is? X
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